Question about how to take care of GBS patient

hi tyruschen & welcome,

your english is fine. it would help if you told us as much about her as you know. symptoms, medical procedures done, medication taken, present status, is she in pain, etc. gbs has so many faces. take care. be well.

gene gbs 8-99
in numbers there is strength

If they are starting the plasme exchange that is a good thing and hopefully she will start feeling better soon. There is not much known about GBS and this has been one of the most educational sites for me to talk to others who have been through the same things.

Anyways, as far as caring for your cousin… Just being there for her and helping her in any way you can. I had family with me all the time in the hospital and my mom sat with me while I had all of my plasma exchanges and gave me something to drink. I got really thirsty when I had plasma exchange done. If she is able to eat on her own then being there to feed her (be sure to cut things up very small like feeding a child to avoid risks of choking and also she will probably get very tired while eating and chewing anything bigger than very small child like pieces is tiring). I used to take a couple of naps during my lunch because I got so tired. But having someone there offering to feed me was the best thing for me. She is not going to have much of an appetite but will still need someone to feed her as she needs the food for energy. Soups were some of the best things because I couldnt chew things like chicken or hamburgers (even without the bun). I ate a lot of soups and hotdogs (without the bun and cut up very small).

Also, your cousin will just want someone there with her to read the paper to her, watch a movie with her, talk, or anything else. My mom would brush my hair for me which didnt matter to me at the time but looking back now it was really nice and maybe it did help me to feel better. I wasnt able to get out of bed for a few days so my mom brought me my toothbrush and a cup of water to rinse the brush and another cup to spit in… that was great to be able to do that from bed. Also if she cant get up she will need someone to bathe her, using washcloths while she is in bed. Once she can make it to the shower she will need someone to still bathe her maybe for a while while she sits there. My sister would also come in and wash my TEDs for me (those tight stockings they put on you in the hosptial to help prevent blood clots). It was nice that people were willing to be there for me and help me out with all these little things.

The main thing is just being there and letting her know that you are there. Helping out any way you can and offer to do things for her. It is very scary going through though this and just hoping you get better and having someone there for you is probably the best thing so you dont feel quite as alone.

hi tyrus,

as long as she can communicate, she’ll be able to let you know what she needs. gbs stands for Get Better Slowly. so she should rest/sleep as much as her body tells her to. it is the fastest road to recovery. neurontin if she is in pain. take care. be well.

gene gbs 8-99
in numbers there is strength

Tell your friend about this site and maybe she has some questions for us too! Each case is different and how it effects the patient. It does get worse before it gets better and the plasma is not a cure but will stop the progress and turn the immune system around so it starts healing slowly.

Help her with personal things. Read her mail to her and have friends send her mail. Her visit to the hospital should contain some rehab also. The hospital will get her on a routine. That will help her get rest. Let her get all the rest she can. Tell her to listen to her body. She may be sensitive to light and sounds. Vision might be effected. Weight loss is normal. Find a good book and read a chapter to her when you visit. Write letters for her so she can keep in touch and let friends know how she feels. It is nice that her family can do things for her. Offer to do things that they might not feel comfortable doing. Like a manicure or pedicure. Laundry or shopping for things that she might need. Anything you can offer that will take some stress off of her family members will also make her feel better. Our caregivers have to take care of themselves too. We rely on them for years. There is always little things we need help with.

Don’t ask too many questions. Even communication is exhausting to the GBSer. Sometimes just being there for moral support when she is being moved to another room or having tests run. I liked back rubs and my skin was very dry so I liked lotions put on my hands or just my fingers straightened out. Others could not stand to be touched it was too painful. Communicate with your friend….that is best!

Tell her we are here for her and hope to see a message from her soon!

Hi there,

AIDP = GBS = Acute Inflammatory Demylenating Polyradiculoneuropathy

CIDP= Chronic Inflammatory Demylenating Polyradiculoneuropathy

So AIDP is just another name for GBS.

Jerimy

tyrus,

the plasmapherrsis is working if she stops declining. the recovery will follow later. all these varients of gbs are treated the same especially at the beginning. take care. be well.

gene gbs 8-99
in numbers there is strength

Welcome!

Keep reminding your cousin that you love her, that she is important to your family, that she Will get better and that you will continue to be there for her during her improvements and recovery. As no one can tell you how much recovery she will have, it is important to keep encouraging her daily. If you keep a diary for her, then she will be able to read about her improvements when she becomes discouraged. I wish your cousin well.

Keep returning with your questions as there’s always someone here that “knows” from personal experience.

You may not see increases and she may not either, but she may still get a little worse or may stay the same for a while. If she is lucky, the treatments will work and I have heard some people actually walk out of the hospital after they finish their treatments. Other people though take longer to recover and dont walk out on their own even after rehab (like me and many others around here) but we are still getting better. It is a scary time and nobody knows much about it, when it will get better and how fast it will get better. A good site for information is the Mayo Clinic. They even have a video of the plasma exchange procedure if you are interested.

[url]http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413[/url]

Your cousin is very lucky to have you. Your encourgement, smiles, and hugs will help see her through. I was very glad the doctors began plasma pheresis. I’ve had 106 of these; they work miracles. IVIG did not work for me and actually made my liver upset. It also gave me tremendous headaches.

The number one thing that blessed me while I was in the hospital was when people looked after my family. There wasn’t much they could do for me, other than pray and offer encourgement. However, some friends from church provided dinners for my family (they continued for two months when I arrived home), rides to and from school for my children, play dates to help my children get the fact that mom was in the hospital, etc. off of their minds. Anything you do for your cousin’s son, as well as husband, will bless her greatly.

Take Care.
Julie

Tyrus,

That is such good news, please tell her hello for me and I am happy to hear she is in rehab. I hope she comes and joins us her when she is able and that you also continue to visit us. Take care.

Jerimy

Thats great news! Dont be discouraged if her therapy begins to level off. Some people continue with great success until they are back to normal and some will level off and then gradually get better. But sounds like she responded to the treatments quickly so that is definatly good news. And as Jerimy said, have her drop by and join once she is out of the hospital.